Truths

So I have been thinking about this post for quite some time. Thinking about writing it, mentally composing it in my head, over and over. Then I mentally delete the whole post and go about my day-to-day.

I've gone through that whole routine, in my head, probably six times over the course of the last few weeks. But yet again, I revisited the idea of sharing this with you. So here I am. Sharing. Please keep in mind, this is not an easy post for me to write, it will likely not be the most elegant piece of prose you read today - and it's highly personal. It's taken me a lot of mental toil to reach this point, and frankly, it makes me feel highly vulnerable. Which I hate. In fact, I have been sitting on this post for days, without hitting the "publish" button.

But a lot of people share personal stories on their blogs. I think that's why I like following and reading, because they feel "real". (Or at least, those bloggers allow you a momentary, unfiltered glimpse into the everyday.) I loved how honestly Erin Gates from Elements of Style shared her ongoing battle with body dysmorphic disorder. Or how Tina from Carrots 'N' Cake talked about her colitis diagnosis. So, with that in mind, get ready for some serious word vomit.

So here's the thing: I'm not well. I mean, I'm fine, but these days my health is less than ideal. I am living with Kidney Disease (specifically this one), and right now, things aren't going great.

I'm mean, I'm fine. Just not great.

I was officially diagnosed in 2004, shortly after I graduated from college. I presented with no typical symptoms, I just felt "off". I could tell my body wasn't functioning correctly, and a doctor picked it up through a series of routine tests. Since then, living with this disease has more or less, affected my life everyday. I try to maintain an above-average healthy lifestyle. I workout regularly. My kidneys are not capable of processing meat and animal proteins in the same way as "normal" people - so I abstain from eating beef and pork (which are the two most challenging proteins for your body to process). I try to get plenty of rest. I watch my liquor intake (sometimes less successfully than others). I try (usually very unsuccessfully) to watch my stress level.

And for the most part, the above precautions have kept me in pretty good health, with the exception of one (very serious) instance when I was in business school. (Story for another day).

So what changed? Why were things going so well, and now...less than well?

 

This girl. You know how "they" say that once you become a parent, you would give your right arm for your child? Well, I didn't give up my arm. Being pregnant, just physiologically, is stressful on anyone's body. And in "normal" people, it means that your body - and specifically your kidneys - are hyper-filtering additional liquids and fluids in highly increased amounts. It's tough on any female - but is especially tough for someone whose kidney's are a bit lame, to start with.

So for the past year, since Caroline's arrival, I have been working with multiple doctors, monitoring my health. All along, we have been hoping that my body would "rebound", and some of the setbacks post pregnancy were merely temporary.

They were not. Through a series of tests, some not too invasive, and others very invasive, it became clear that having a baby was rough for me. It put my body through a lot, and left permanent, non-reversible damage. Layman's terms: my kidneys do not work as well as they did a year ago.

At this point, I should probably interject - what is {hopefully} a very obvious statement: this is not Caroline's fault. I do not blame her, I do not hold it against her. I would do it ALL over again, just to spend time with this little miracle love bug. She is my whole world. It's really just a suckie thing, this disease. I knew that when I was diagnosed. Hubby knew it when he married me, and we knew it when we decided to have a family. There were going to be risks, and as luck with have it, I didn't get out scot-free.

So why I am telling you now? Because the past few weeks have been a little rough on me. I am currently on heavy doses of truly, truly, nasty medication. Each day I take 60 mg of steroids (Prednisone). And if you have ever been on steroids, or know someone who has - then you know. The side effects are awful. In the last three weeks, I have gained at least five pounds (although I refuse to weigh myself, because that would be devastating). Some of it is water weight, and some of it is, well, not. For someone like myself, who has always been super conscious of their weight and weight management - gaining weight is evil, evil.

What else? Well, I sweat like a pig, I have acne like a 14-year old boy hitting puberty, and I am hungry all the time. My face is starting to swell up and is getting puffy around my jaw line. My feminine neck is getting thick and swollen. Sometimes, it even makes breathing more labor-intensive. Those beautiful family photos I shared with you the other day? We took those the day before I started medication. I had to negotiate with my doctors in order to buy myself an extra week, since we already had it scheduled.

The medication makes my legs swell. I don't have ankles anymore, I have cankles. And when the heat and humidity are really bad, it makes my legs feel worse - as in, I have a hard time getting up from my office desk chair and walking to the printer - worse. When I come home from work, my body is so achy, I just want to lie on the couch and elevate my feet. But that's hard to do with a 13-month old at home.

Did I mention the insomnia? Yeah, I'm starting to get a little manic. I'm getting maybe five, five-and-a-half hours of sleep a night. My brain is going haywire. I can't shut my mind up, and I can't focus on any one task for more than 15 minutes (max). Imagine drinking 20 cups of coffee, then trying to sit down and do work. Or hold a (semi) intelligent conversation during an important meeting? Near impossible. This post alone has taken hours to compose.

I'm moody. For no reason. I want to cry all the time, just because. I have the shakes and it's hard to keep my hands still and quiet.

Am I over-exaggerating? Not really. Would you be able to tell I look different? Perhaps. Since so much of my weight gain and swelling can be attributed excess water, I have been working out. A lot. Hubby would probably call it excessive and slightly OCD. For the past few weeks, I have been working out, at least six times a week. Usually it's only a 30 minute video, sometimes it's an hour walk with Caroline and the stroller, sometimes it's the gym. But it calms my mind, reduces the swelling - and most importantly, keeps me sane. In a time when I feel totally out of control in almost every way, routine and consistency are my two closest friends.

But here's the thing friends - an end is in sight. The light at the end of the tunnel. Soon I will get to ramp down my medication, and start weening myself off over the next few months. I remain hopeful, although admittedly desperate, that the side effects will start to subside and maybe I can start functioning normally and start to look normal, once again. Because, I have to be honest, I'm not doing a great job of keeping my shit together these days. Although I am trying, ever so very hard, to continue to be a productive employee, a good wife, and a doting mother.

I have a small request readers - please don't pity me, please don't feel sorry for me. I didn't share this story because I am feeling sorry for myself (although I have my moments). I've never mentioned this around the blogworld before, because I don't want a free pass. I don't want people to let me off the hook. I don't want anyone to give me the easy way out. That's just not my style. But perhaps I am sharing now, because I have finally made peace with my disease. I have accepted. And maybe it's okay to admit (to myself and to you), that I am so not perfect. I so don't have everything together. I try so hard to keep up appearances, and frankly - it's terribly exhausting.

Yes, this effects my life. But does it actually change how I would otherwise live? No, not really. I don't really have that much to complain about. I have a beautiful (and healthy!) daughter, a loving husband, a darling home and a very full life. I have many blessings in my life that I am thankful for each day. So just because my health is less-than-perfect, I still feel very thankful each day. So please dear friends, don't pity me. I will be okay. Swears.

So where do we all go from here? There are usually a few follow-up questions that people ask, so let me preempt those? My form of kidney disease is an auto-immune disease. It's "genetic" similar to the way diabetes is genetic, in that some people are just pre-disposed to developing suckie conditions. It's not genetic, as in, I have dark hair, therefore my children might have dark hair (thankfully). But because it's auto-immune related, I will always have this. There is no cure, there is no changing it or un-doing anything. I will always have it. My only course of treatment is promoting a healthy lifestyle, and managing set-backs with medication.

Yes, one day I will likely need a transplant. But not now, and (hopefully) not for some time. If you know someone with B-positive blood type (ironic, no?), let's be friends.

With this recent set-back, I have renewed my focus on my health (not that it ever really went away). I am looking into alternative diets - I have been testing out a Gluten-free (or a gluten "light") diet for the last few weeks. I am searching, ever so hard, for other ways to manage. Manage my diet, my physical health, and most of all, my mental well being. I realize that heavy meds are the typical answer for situations like mine - but I hate that a reactive response is my "best answer". So I have started to search for other, more proactive answers. So consider this blog post as a gateway to another journey? Going forward, I am going to try to be more transparent with you. I will try to do a better job of not hiding, but explaining. I will do a better job of trying to document my health journey, and health decisions. After all, maybe you are searching too? So in addition to this blog being a source for DIY inspiration, recipes, all things Mommywood, plus style tips, I am adding a new chapter - my health journey. So I hope you continue to follow along as this blog continues to develop, and I hope you will be patient with me as I try to do a better job of keeping you informed.

Caroline is waking up from her afternoon nap, so I am going to go rescue her from her crib, finally hit "publish", and put this post to bed. Part of me (the majority) is going to want to immediately remove this post and forget I decided to write this at all. And the other part of me believes it's a good thing, and I should just be brave and I'll survive.